Kohl and the Gang

Kohl,

Sometimes I contemplate all you have taught me over the last five years.

Now, I’m not going to sit here and pretend like you’re my mentor or some sort of Mr. Miyagi to my Daniel Laruso.  I mean, you’re five so you still don’t know shit.  But the circumstances in which you checked into this life, and the way you continue to learn and grow have taught me countless lessons.

The importance of patience is one recurring theme.

You have enrolled us in a masters level course on that shit. Before my enrollment in that course, I never considered myself a patient person.  And I wish I could say now that you have made me patient and that I now approach my days with a zen-like calm and enlightenment.

If that were the case, I would not routinely make snarky comments to your mom when she makes us late to every social event we are invited to.  I would not have called that gentleman with the Ohio plates that we were stuck behind yesterday a stupid ass wipe because he was moving at a snail’s pace.  And I would not continue to get frustrated with the pace at which you learn and develop.  I would not overlook the miracles occurring in front of me every day.  I would remember that small things like your laughter at fart noises and the fact that you are starting to sleep with your arms straight and above your head are actually huge things. Yet I continue to forget these very important lessons.

But it is not because I am “impatient.”

I have discovered that calling myself “impatient”  is not constructive because it takes away accountability for my actions. I can chalk things up to just being impatient.  Because that’s the way I am wired.   If it were true that you and I are just wired certain ways, then I guess I will always be an impatient douche bag, and you will always have the limitations you have.

Well, young Kohlito, you have helped me discover how that is bullshit and how each new moment is a new opportunity.  Every second brings a new opportunity for you to learn something and move past your limitations.  Every minute brings a new opportunity for me to be less of a douche bag.

And I know there will be  setbacks.  I know that there will be times where it will feel like you’re moving one step forward and two steps back.  I can guarantee there will be times where my foibles will continue to rear their ugly faces. But there is an enormous freedom to knowing that we are not resigned to those moments.

So thanks for helping set me free.

I detest clutter.

In the early years of our marriage, Sarah and I got into a screaming match over whether we would hold onto some of her textbooks from college.  Sarah was unwavering in her desire to keep such classics as the “Parasitic Diseases (5th edition)” or “Principles of Anatomy & Physiology (10th edition).”  I, on the other hand, opined that these tomes were taking up way too much space on our bookshelf, so I yearned to rid ourselves of them.  My sarcastic comments comparing these texts to Homer, Shakespeare or any other classic that has stood the test of time were ineffective; however, as I type these words, those books still sit on our shelf.

When we had kids, things got much worse.  Kids come with a lot of shit, both literally and figuratively.   I have tried to impose moratoria on my mom from continuing to buy things that our children not only do not need, but for which we have no room — clothes, shoes, horrible books, creepy toys that sing or talk to me, and some medieval torturing device called a “thunder gourd.”

Arguments with my mom about these things are equally as fruitless.  Whereas Sarah relies on violence of action and aggressiveness to get her way, Mary Ann plays the guilt card with unabashed brilliance.

“Fine, take away one of my greatest joys as a grandmother,” she will say.

Or, when I draw arbitrary lines in the sand and refuse to bring home a pair of summer shoes she has just bought for Amelia in the month of February, she will remind me:

“You know I’ll be dead one day.”

These battles are lost and the countless hours I have fought against the buildup of clutter in my life have been largely ineffective.  Yes, it’s a ridiculous, first world problem, but it still stresses me out.

Aside from sheer aesthetics, I think what bothers me so much about all this stuff is that it serves as a tangible reminder of how much of an unmitigated disaster our lives can be sometimes.  It is symbolic of how much I just don’t have my shit together, and it flies in the face of a fundamental desire for simplicity.

Yes, I have lost many of these battles.  And while I will continue fighting the good fight and I am far from having lost the war, I will admit that having a child with brain damage has helped me discover a few of the virtues of messiness:

I have learned that messiness, chaos and disorder are inevitable and to fight against them is, sometimes, to fight against the natural order of things.  There is a also certain freedom in embracing them.

As a Marine, I learned that smiling and saying “good times” when you are freezing your ass off in the cold, wet rain in the woods or while undergoing extreme physical exertion have some sort of psychological effect that make bearing those things much easier.

As a parent of a child with brain damage, I have learned that laughing in the face of things that are profoundly unfair and ridiculous in the scope of how much they can suck helps make those things a bit more bearable.  Sometimes you gotta say fuck it.

I have learned that learning itself is messy.

We said “fuck you” to developmental milestones a long time ago when it became apparent that Kohl was not doing the things that he was “supposed to be doing” as a rapidly-growing infant.  But freeing ourselves from the tyranny of these milestones was only the beginning.  I continue to discover how nonlinear and messy Kohl’s development has become.

I have written before about getting so hung up on the things Kohl is not doing that I sometimes miss the tiny miracles occurring right in front of my face.  Sure, he may not sit up yet by himself, and maybe it’s a pain in the ass sometimes to bathe him and dress him. But he is also becoming more comfortable in his own body, more vocal and happier.  He is communicating with us.  Miracles are happening.  I just need to learn to continue opening my eyes.

I also see this principle in action with Amelia whose development has not been hindered by brain damage.  She can do things that, from what I can gather, seem advanced for her two years: spell her name, count past 20, solve complex puzzles, show amazing recall of things including, unfortunately, wildly inappropriate jokes about dicks and balls.  Yet, even as she shows us how amazing her little brain is, things like pooping in the toilet continue to elude her.  Instead of telling me good night, she informs me that she just farted.  Instead of telling me good morning, she gives detailed descriptions of her boogers. Her learning is messy too.

And as I observe the way Kohl learns and grows despite having a massive disadvantage and juxtapose that with the way Amelia learns and grows like most kids, I just can’t help but to be awestruck.  Medical science seems to be in the beginning stages of learning what an amazingly complex organ the human brain is.

And there is beauty in complexity.  There is beauty in the mess.

For the last three weeks now, I have written about my inner demons. These demons have always existed in some form but after Kohl was born and gave us the blessing and enormous challenge of raising a child with severe disabilities, their power over me has grown to unhealthy levels. In an attempt to lessen their influence, therefore, I have named them, personified them and sent messages to them. If I continue doing this, however, I fear that I may eventually fall off the cliff of sanity and begin yelling things like “it puts the lotion in the basket” or some other nonsense.

So this is the third and, mercifully, the last demon I shall confront.

In Round 1, I took on “Percy, the Perpetually Pissed.”  A formidable foe, the anger and hatred Percy spews escalates situations in which reasonable anger is warranted to the realm of the unreasonable.  What’s worse, Percy all-too-often causes me to miss out on just being with my son in the present moment. Rather, Percy causes me to dwell on the past, worry about the future and obsess over trying to fix Kohl and getting angry that he is not making progress at the rate I would like him to.

Round 2’s battle was against Percy’s cousin, “Joffrey the Jealous.”  Just as Percy ruins things with anger, Joffrey does it with jealousy. In his constant quest to compare my life with others, Joffrey firmly believes that my plight, in raising a severely disabled child, is among life’s worst.  As a result, Joffrey often causes me to invalidate real problems that others experience. And the wall of jealousy that Joffrey erects is also a barrier to my enjoying those special moments with my son that Percy also deprives me of.

Whereas Percy and Joffrey often work in tandem, the third and final demon I seek to control is a loner. He is related to neither Percy nor Joffrey.  He prefers loneliness and sadness.  He is known simply as “Sylvester.”

Sylvester

Sylvester is the veritable turd in the punch bowl.  He is the snickers bar in the pool that everyone thinks is a turd. He is like the spawn of Eeyore from Winnie the Pooh and Debbie Downer.

Sylvester was born back when Kohl was in the NICU.  His birth came when the neurologist was having a difficult conversation with us.  Kids like Kohl, he explained, often do not live past the age of 15 or 16. Any loving parent will do anything for their kids. When your child has a serious medical issue or a severe disability, that loving parent will do anything in their power to ensure their child lives as full a life as possible.  The neurologist was cautioning us against letting that desire be too consuming.

I got where he was coming from.  He had seen too many parents that essentially gave up their lives to help their profoundly sick children and when that child was taken away too quickly, they had no life left because that child was their life. While his intentions were undoubtedly good and, in his mind, he was just trying to be helpful, this conversation was, in retrospect, not only unnecessary but extremely harmful.

Maybe it was his horrible bedside manner.  Maybe it was the way he came off as completely lacking in empathy.  Maybe it was his physical appearance that, my father Reuben Leonard Chrestman III artfully described as “looks like a fucking muppet.”  But this exchange stuck with me and not in a good way.  It was devastating.

Sylvester was born that day because the knowledge that it is not uncommon for kids like Kohl to have unfairly short life spans is his fodder.  The pervasive worry of losing Kohl fuels what can sometimes be paralyzing anxiety and allows Sylvester to do his bidding.

Sylvester appears  in the obvious places.

We are members of a network of other parents with children affected by “hypoxic ischemic encephalopathy,” the form of brain damage that Kohl has. All too often, through that network, we hear of parents that had to say goodbye to their children.  This defies all notions of fairness. It shatters any belief I once held that everything happens for a reason.  And it causes me, selfishly, to think about losing my own child – one of my worst nightmares.

But what really makes Sylvester’s tormenting of me sting is when he pops in and ruins what are supposed to be the happiest moments.

Those tiny miracles when Kohl looks me in the eye, smiles at me or laughs at me.  Enjoy these moments while they last, Sylvester will tell me.

Or during those tender moments when I kiss Kohl goodnight.  This could be the last time you tell him goodnight, Sylvester reminds me.

Or when I wake up in the morning as Kohl sleeps.  Better make sure he is still breathing, Sylvester says.

Not taking things for granted and appreciating our fleeting moments here on planet Earth is one thing.  But the bullshit dances Sylvester does in my head is something entirely different.

So, Sylvester, here you go. First of all, your name would be a lot cooler if you were a 295-pound defensive lineman.  But you’re not, so your name is just stupid and sad.  Secondly, shut the fuck up.  Seriously.  I get it.  Kohl was born with brain damage.  He has challenges.  But in so many ways, he is just another five-year-old little turd.  He is here now, and he is fine.  We are fine.  In fact, we would be much better off without your interference.  Who knows what will happen tomorrow.  Who knows what will happen 5, 10, 15, 20 years from now.  Do you?  No, you do not.  Worrying too much about tomorrow ruins today.

And that goes to you all too, Percy and Joffrey.  That is the one thing you all have in common.  You ruin my todays with this little fucker:

And these bitches, one of whom wears a scarf made of toilet paper:

So one last time, Percy, Joffrey and Sylvester: PISS OFF.